Down’s Syndrome Scotland responds with dismay to the latest research findings on preventable deaths within the learning disability community in Scotland

Down’s Syndrome Scotland responds to the latest research findings on premature and avoidable deaths within the learning disability population in Scotland
Eddie McConnell, Chief Executive of Down’s Syndrome Scotland reacted to the research findings with dismay, he said: “We should all be appalled at these findings. It is completely unacceptable in 2025 that people with learning disabilities, including people with Down’s syndrome, are dying prematurely from causes of death that are preventable and avoidable.

For our own community of people with Down’s syndrome, we have known for too long that they are dying prematurely. The original research carried out in 2017 by the Scottish Learning Disability Observatory, revealed that people with Down’s syndrome were dying, on average, 28 years earlier than the general population.
What is additionally concerning in these latest findings is that ‘Down’s syndrome’ is identified as the most commonly recorded cause of death among adults with learning disabilities in Scotland.

We need to understand, with some urgency, why medical practitioners are still listing ‘Down’s syndrome’ as a cause of death. Down’s syndrome is a genetic condition, it is not an illness and it cannot kill you. We are deeply concerned that the actual cause of death may be going unrecorded in many of these premature deaths and this leads us to question whether the presenting health condition has been identified and treated, in many of these cases. It is entirely possible that many of these individuals could have
lived longer had their health condition (and not their disability) been fully diagnosed and appropriately treated.

He continued: “When we speak with families, they tell us that there are many clinicians and health professionals who respond positively and provide appropriate care and treatment. However, the experience of other families is not so positive with many of them telling us that medical practitioners and health professionals often see a person with Down’s syndrome instead of seeing a patient who has acute and urgent health needs.

People with Down’s syndrome deserve equal access to good quality healthcare and medical treatment. These new findings suggest that the conflation between disability and health by medical practitioners is still significantly prevalent and could be masking the identification of underlying health conditions and their subsequent treatment.
It is evident from this research, that we still have much to do to challenge perceptions and change practice – many of these premature deaths are avoidable, preventable and treatable.

For the families left behind, there remain many unanswered questions about what happened to their loved ones in their final days of their lives.
We should all be greatly concerned at what these findings are telling us.”

To read the full news release from SLDO (Scottish Learning Disability Observatory) here and for the SLDO Mortality Briefing here